Dating is hard and relationships are stressful. Living with neurofibromatosis can be hard and stressful. What a combination! We asked a few people living with NF1, NF2, and schwannomatosis to share their experiences and thoughts on meeting people, dating, relationships, and love.
“’Finding someone’ isn’t easy for anyone no matter how you look or hear or sound. Having NF doesn’t give us exclusive rights to claim it’s hard to meet people. Everyone has a ‘thing.’”
What is the most difficult thing about dating with NF? I felt like I was always having to ask my girlfriend to do more than most guys. Things like hear the specials at dinner or a person through a drive through speaker. Just silly things like listening to voicemails became something that caused anxiety so I always debated what was too much to ask of someone.
What is your biggest worry? I’m married now but those feelings never totally go away. I still feel the need to apologize when we do something together in a crowded place or loud setting and am anti social. And we haven’t been to a concert together, one of her fav things, in 17 years. I worry she’ll resent me one day for missing out on some things. I certainly worry LESS now but it never totally leaves me. She’s also awesome about it so that certainly helps.
When/how did you tell your partner that you have NF? She was in med school so I told her about my tumors and she wanted to see the scans and radiology report. She thought it was fascinating. That was very lucky for me because it turned a worrisome conversation into something new and interesting.
What advice would you give to others that have NF about dating? My biggest advice is to just be your best you. “Finding someone” isn’t easy for anyone no matter how you look or hear or sound. Having NF doesn’t give us exclusive rights to claim it’s hard to meet people. Everyone has a “thing.” My experience with any relationship (romantic, friendly or professional) has been that things start to go wrong when I try to be someone I’m not or someone I think they want me to be. If you’re being authentic and they like that, hooray, you get to be yourself around them! What if they like the fake you? Are you going to commit to that role forever?
When my wife and I were dating I couldn’t go to the movie theater because I couldn’t hear it well enough. Instead of saying that, I made a big production out of going to the grocery together to buy ingredients to make our own pizza and popcorn. We each picked a movie we liked that the other hadn’t seen. I asked to be sure they were captioned because of my hearing. So we addressed the situation while making it a positive experience and unique date night.
A few years later, Nora and I were newly married and started making my dr appointments in Los Angeles on Thursday so we could do fun California stuff on the weekend. In doing so we turned a negative experience into an NF related trip that we could look forward to doing together.
With a little bit of effort, a lot of issues can become opportunities with a slightly altered perspective.
Click here to read more about Matt’s NF story.
Leslie Neighbors, Schwannomatosis
“At the age of 28, mountain biking was taken. I just hit 30, and already feel as if certain joys, privileges, and well… some basic human functions are on an hourglass paradigm.”
When Dell and I started dating, it was 2011 and I was 22. I presented no real problems at the time. After we’d been together about a year, he introduced me to mountain biking. It took some serious relearning of what I’d forgotten as a child but I eventually got pretty good at it!
However, after a few months of biking and building the outer calf muscles, we noticed my inner Gastroc was atrophied. I couldn’t make my mind use that muscle group. At all. We continued to bike for a couple years, and the inner calf stayed atrophied. But the most concerning thing were these superficial ‘cysts’ or ‘knots’ that I kept feeling. What alarmed me was the shock that I got every time they were bumped. Biking got harder and harder for me.
My last bike ride was September 25, 2017. At the end of that year, Dell and I picked up the nerve tumor quest in full force, and finally, we were heard. February 2018 is when I got the first scan that revealed what I’d been feeling for years. Dell asked me to marry him that same month.
Carrying Schwannomatosis is a daily journey of mental, physical, and emotional strength. Of course it has frightening moments. I, many times, fear total pelvic disruption. At the age of 28, mountain biking was taken. I just hit 30, and already feel as if certain joys, privileges, and well… some basic human functions are on an hourglass paradigm. I wonder, all the while trying not to worry… what my life will look like in 5 more years, or even just 2 more years. I grow clusters of tumors like a madman, and all in super intricate places. There is no “normal.” There is no surgery for me right now. There is no remedy. There is no cure. There is no “getting better.”
Dell is my best friend, my soulmate, my rock, knight in shining armor, and has been my husband for a little over a year now. Our NF journey, technically, has just begun. I couldn’t be more blessed to have this incredible man by my side. I love him more than he will ever know!
Click here to read more about Leslie’s NF story.
“Don’t be ashamed about your NF. If a person can’t accept that part of you, there’s someone else out there they will.”
What is the most difficult thing about dating with NF? Asking for help! I’m super stubborn and prefer doing things myself and worry about looking “needy.” But it’s ok to ask your date or partner to help. If they really care then they won’t want to see you struggle.
What is your biggest worry? My biggest worry is that I am being a burden. I’ve experienced this in a previous relationship, feeling guilty that my medical problems were interfering. I don’t generally feel that way in my current relationship because my attitude about living with NF has improved a lot. I’m also very blessed to be dating someone that isn’t phased by all the medical issues and supports me through all of it. But every once in a while. I still have that worry.
When/how did you tell your partner that you have NF? I told him right away. I’ve gotten more comfortable with telling people over the years, and I’ve learned that putting it off solves nothing. I didn’t go into all the gory details in the beginning but gave a basic explanation of what NF2 is.
What is that like meeting someone new? How do you tell them you are hard of hearing/deaf? Were you nervous? How did go over? Meeting anyone new, I have learned the hard way how important it is to tell people you are hard of hearing or deaf right away and exactly what you need from them. I used to hide that I was hard of hearing, then people would assume I wasn’t paying attention when I would say “what?” over and over.
As a late-deafened person, it is always scary meeting someone new that doesn’t know sign language. Of course, I am aware of other ways to communicate (lip-reading, text/writing, gesturing, etc) but I still worry. Do they talk fast? Will I be able to read their lips? When I feel like my eyes are gonna pop out of my head from lip-reading so long, will the person mind have to write/text for me? Will we connect despite the communication barriers?
With some effort, those barriers will break down and communication will improve. I have been teaching my boyfriend ASL, and our communication has improved immensely compared to our first date when we were writing back and forth at dinner. I’ve learned there are people out there that will make an effort to help you have full communication access. Those are the kind of people worth your time.
Do you do online dating? I met my boyfriend online. Online dating is a mixed bag. I got lucky 🙂
What advice would you give to others that have NF about dating? Don’t be ashamed about your NF. If a person can’t accept that part of you, there’s someone else out there they will.
“Biggest worry by far, is being rejected because of the way you look due to NF. Granted it was a bigger issue for me than it was for anyone that I have ever dated…I was my biggest obstacle in navigating relationships while having NF.”
What is the most difficult thing about dating with NF? Dating is difficult to begin with and with NF it just makes all the more complicated and anxiety generating. The fear of rejection is just magnified by something you have no control over. For me, having NF1 has caused me to have visible tumors on my back and chest. This leaves me very vulnerable and anxious that I will be rejected for something that I, myself, wish I never had.
If you’re in a relationship, when/how did you tell your partner that you have NF? When I have entered a relationship with someone I am very upfront and candid. There is no soft/safe way to tell someone that you have NF and all that goes with it. Most of the time I found myself educating someone about the condition and sharing what it’s been like for me. I told my now wife on our first date that I had NF – In actuality I told her pretty much on the 2nd or 3rd phone call we ever had. I knew that if we entered into a relationship that it would be long term, so I just got it out of the way.
What is your biggest worry? Biggest worry by far, is being rejected because of the way you look due to NF. Granted it was a bigger issue for me than it was for anyone that I have ever dated. I found that former girlfriends and my now wife really didn’t find any issue with me having NF. If anything, I was my biggest obstacle in navigating relationships while having NF.
What advice would you give to others that have NF about dating? First off, having NF is a great filter for weeding out all the people that just aren’t worth your time. I hate to be cliche, but if someone is the right one for you, it will be because they want to be with YOU…not because you have/don’t have NF. Secondly, put yourself out there in any way you feel that is right. I met my wife via eHarmony. Online dating gets all the ambiguity out of the way and allows each person to be upfront and candid from the start. Dating with NF is tough, no doubt. However, we (who have NF) tend to be harder on ourselves about it than the potential person you will spend the rest of your life with.
Click here to read more about Alwyn’s NF story.
“You let in love and you start loving yourself… We fell in love when I couldn’t smile and over the years my smile has been coming back. I believe because of his unconditional love he has given me.”
I have been with my boyfriend for five years now and counting. I met him online on a dating app called Tinder. Yes, Tinder was not the best structured app to finding everlasting love but amazingly I found my other half. I decided to try online dating because it was the new popular dating thing to do. At the time, I was still in the healing progress of accepting my new physical appearance with my facial paralysis and hearing loss on the right side. I was discouraged in my smile because I couldn’t smile. I didn’t have full confidence in myself to date but I was not trying to guard myself from finding love. So, I set up my dating profile with photos of myself that hid my facial paralysis by my long bangs and I definitely didn’t put in my dating bio I had Neurofibromatosis type 2 and was partially deaf.
Then that day came we both swiped right! We agreed to meet in person for a blind date. I was very nervous to meet him face-to-face. Why was I so nervous? He didn’t know I had NF2, so I shouldn’t have been nervous but maybe because I didn’t want to be rejected. I knew I needed to warn him about my face weakness. It would have been unfair to him if I didn’t tell him. Before we met I explained to him about my face weakness by a text, but the lies continued. I told him “My face weakness was caused by a snowboarding accident.” I chose not to be honest with him on the first date because I thought he wouldn’t give me a chance if he knew about my illness and I didn’t have to go in detail what NF2 was. I thought this would be okay. This lie I created gave me some relief at the time then started to make me feel worse about myself, I had knots in my stomach and depression because I felt I didn’t accept the true me and thought he wouldn’t either.
Then the second date came, I didn’t want to hurt him and hurt myself by this lie. He was the type of man I dreamed about to have a future with. He was kind, honest, and understanding. I realized I was guarding myself from love and that’s when I took a deep breath and told him the truth, “I lied to you on the first date. It’s about my face, it wasn’t cause by a snowboarding accident. It was a brain tumor. I also have more brain tumors I have Neurofibromatosis type 2…”
Now thinking back five years later on our relationship, my advice to people dating with NF or NF2 is be honest with yourself. By trusting your partner with the truth, you allow yourself to heal through the process. You let in love and you start loving yourself. He understands the struggles I go through and I understand I’m not the only one going through the struggles. He and I are a team and we will get through it together. We fell in love when I couldn’t smile and over the years my smile has been coming back. I believe because of his unconditional love he has given me. Being honest and trusting your partner helps the two of you grow together. “Truth is like a surgery. It hurts but cures. Lie is like a painkiller. It gives instant relief but has side effects forever.”
